Tuesday, November 15, 2011

Update

We are still here (I think)!

Sorry I've been MIA, but finding the time or energy to blog lately is nearly impossible. I just wanted to give you guys a brief update- Tripp is doing about the same. He goes straight from the bed to the rocking chair and back to his bed- and that is what his days consist of. Some days will be better than others, but even on a "good" day, he stays in the rocker and will give us some smiles. He is currently on the last oral antibiotic option (the strongest oral antibiotic we could get) and its still not helping with his pseudomonas. He is literally covered in infection and yeast, which means he's constantly itching. I've started the Tagament which has helped a little, but he is still so uncomfortable. Baths are still unbearable. He is constantly running fevers and recently having more and more new blisters popping up. The area around his feeding tube is so raw and his feeding tube is leaking (going up in size won't help because it will only make the hole bigger). So there's nothing we can do- and feeding him or giving him his meds burns that area do bad that he cries and holds his belly each time. So it's been hard just getting enough nutrition in him to keep him gaining weight. But he's a fighter, I'll tell you. He's not ready to give up... He's such a ham when he's feeling okay.

On a brighter note, you guys are doing an amazing job "Trimming Tripp's Tree!" Thank you all so so much- you are SO kind! And most of you were right when you said we would need a bigger tree! I never thought we would get the response we did. You all are amazing and these ornaments are something I will treasure for the rest of my life. It is so touching to see the people across the world who love and are praying for my little man.

Please continue to keep us in your prayers. Like I said, I'm in the middle of some big decisions and I am trusting in God that He will guide me in the right direction to make the right choices. I will be giving a more "lengthy" update on what has been going on with us next week! Just please bear with me and pray really hard:)

And as always, THANK YOU all for your support. We are blessed beyond words.

P.S. If you would like to see pictures of Tripp's ornaments, I've been trying to keep up with posting them all on my Facebook page. You can see them HERE.

Courtney, I can't even imagine how hard this is for you and Tripp. Please know You are always in my prayers and God has a plan for this little angle. Its amazing to see the strength he has. Look at the path he has made for us. I have learned so much form this little man! Love always!

Courtney,I have to tell you that I was listening to the radio driving to work this morning and "Little drummer boy" came on. I cried uncontrollably and couldn't figure out why. That song had never evoked emotion in me before. Later today I realized I was crying for Tripp. Apparently you and Tripp were in my subconscience. I pray every night for you.

You are such a strong person - Tripp must get that from you. I am sure you already heard about this, but I saw on the online shopping site called "Little Rue" that Courtney Cox has a boutique today with the proceeds going to support the Epidermolysis Bullosa Medical Research Foundation. Glad the word is getting out about EB!

Thanks for the update, I´ll be praying and even fasting for Tripp! You have to know though that you and Tripp really do make this world a better place, your good influence on people extend beyond towns, cities, states and even country borders! I´ll keep praying that God guides you through your decisions, as I am sure he is.

courtney, God continues to bring you and tripp to mind so often.When we run to Target especially, seriously. We pass by anything Elmo and the kids and I all shout out, "OHHHH! TRIPP!!!!! GOd BLESS TRIPP and HIS MOM!!!" Press on my sister in Christ. God knows and cares. This is not our home, but we await an eternal home with him in heaven , healing and peace and no more tears for all eternity.

I found out about you and Tripp on Sunday night and since then you guys have been on my mind and prayers. The two of you will ALWAYS have a place in my heart. I find myself singing the elmo song everyday. Thank You so much for sharing your sweet drummer boy with us.

My heart is full of love and heartache for you. You never cease to amaze me with the strength, courage and grace you consistently display. Your little man is a miracle in and of itself....he has forever stolen my heart.

Oh little Tripp, you are so very, very courageous. I don't understand why you have to live this way but I know in heaven it will all make sense as we get to set the role you are playing in God's Sacred Romance. You are my hero sweet boy!

Much love to you guys. Thanks for posting. Every time I log in to blog, I check for an update from you first, and I was thrilled to see one tonight! I literally breathed a sigh of relief! The response with the ornaments is so uplifting! Just a tiny token of how much you and Tripp have blessed this world with your testimony of faith and love. All our love, Tim and Angelique

Courtney, i've been following your blog for a few months. When i first found it, i couldn't stop reading your blog because i couldn't believe what you, tripp and your family were having to go through. When i read your blog, you give me such strength. What an amazing mom you are! I wish i could be half the mom you are. My 4 year old daughter knows about you and she talks about tripp and even prays for him (it is all her idea). Know that your friends in california are praying and thinking about you guys. We sent you an elmo ornament. Hopefully you'll get it soon. May this christmas season be full of god's joy and peace.

Sweet Tripp. I think about you every day and I pray to God that he will take away some of your pain. I hate to think about how much you suffer. But you have an amazing mother! You really chose the best one in this world to take care of you. Lots of love from me and my sons :-* You are always in our hearts. /Lisa, Sweden

Dear Courtney and of course Tripp, too, I think of you on a daily bases and wish all the best for you. Please keep your moods up although it is heartbreaking to see what EB does to Tripp, the innocent talented sweet drummer boy.

Dear Courtney: Thank you so much for taking the time to update. So sorry that Tripp is about the same. Please give that precious son of yours a big hug and kiss for me. You are ALWAYS in my prayers. It amazes me how we are getting EB awareness, thanks to you and your awesome son. Maybe someday this awful disease will be gone!!! We can only pray! Always here for you guys. Love and Peace Leah and Tabby's Nana

Thank you so much for taking the time to update. I hope you are finding guidance in making these big decisions that are ahead, and that you know how many people there are out here who support you and your family (especially Tripp) as you continue to fight this disease.

We continue to pray for you and Tripp. My daughter's prayers go something like this (she's two as well) "God, bless the little boy with the blisters. I love him and I love his mama. She is a good mama. Bless her too."

I am praying for you and Tripp so hard. He is just such a precious little boy and such a resiliant little fighter. I think about him all the time, just as if I really know him and my little girls love watching the videos you post.

diaper changes and baths are like if just a bad yeast infection was so terrible for me!!! I hope during those hard moments where you have to hurt him to take care of him you can feel us all hugging you and Tripp through it! I think of you both daily. Will be getting an ornament soon!

Ooops, I just saw the beginning of my comment didn't post!!!! I had said that my baby had a double ear infection, and had an antibiotic that gave him a yeast infection. His little bum was so red and bumpy. I hated those 4 days of knowing it hurt him every time I had to change his diaper. I almost cried thinking of what you have to endure. Our little discomfort was about 1/1000th of the pain you and Tripp go through!!! Then I said.... the rest of my comment above!

Omg! Im crying like a baby reading this! I can't even begin to imagine one of my babies going through this! I must say that I believe God answers prayers! My now 5 mth old baby girl had a brain decease and through the power of prayer and faith God completely healed her and she is as normal as ever! So I know that God will guide you and let you know just what needs to be done! Im praying for y'all! I love y'all dearly! God bless!

Prayers have not and will not cease for comfort and wisdom. Courtney, you, Tripp and your family are on heart and in my thoughts throughout each day. I am so so sorry to hear Tripp is not doing any better and has not been able to try the GCSF, But will continue to storm heaven on his behalf!!!

God Bless you and Tripp, Courtney! My heart aches for the pain the two of you (and your parents) endure on a daily basis. I pray for your sweet little man to get his miracle and for wisdom, comfort, and strength for you every night.

Courtney that baby boy of yours is truly beautiful, he is a fighter and such a strong little man. I pray for you both, for Tripp I pray for a cure and I pray that he stays strong in his battle against EB, for you Courtney I pray that God will continue to give you strength to keep faith in knowing you are doing the absolute best for Tripp and he couldn't have asked for a better mom! On the days when it feels like you are drowning just look at that beautiful boy and he will show you how to get back up again, you will find strength in him and knowing you will never give up so that hopefully one day there is a cure for EB. God Bless you, Tripp, and your entire Family.

Courtney, God bless you for being such a strong woman of faith and for being such a good mommy to Tripp. I know you have probably exhausted every option for Tripp to get him well, but I just wanted to tell you to research anything and everything you can about stem cell treatments for Tripp. I have been reading how it is helping EB in amazing ways. The US and US doctors don't like to tell us about stem cell treatments and you have to go to another country to get the treatments. My son has spina bifida and is paralyzed from the waist down and we are getting him stem cell treatments in February so he can gain sensation in his legs for walking. Ever since I read your blog, I have been researching stem cells as an option for your son and if you haven't already looked into it, I can send you some very good links for you to check out. There have been great success stories with stem cells being used to treat and cure EB. You and Tripp and your whole family will be in my daily prayers! Stay strong, keep the faith, never give up and research all you can because "knowledge is power" and keep praying daily for healing!

I'm folowing you, though I never left a comment. I'm in lack of words fr you and yr little prince.Sending prayers and good thoughts fr both of you guys.Much much much love, from Argentina.Keep fighting!!!

We love you Courtney! We love your family! Still praying for you and Tripp. Zach is always praying for Tripp. Wish I could help more but from what little I understand, God is working through our prayers. I don't know how but am thankful that He knows (Jer. 29:11).

Thinking of you and Tripp. Sending you 'Elmo Snowflake' ornament (from Personalizedfree, order No 048393) - I put your address in the checkout so they'll ship it directly to you. Hope Tripp likes it.Take care.Martina (from the UK)

i fell running. skinned my hands and knees .my hands sting. my knees sting.I cant do anything easily. showers are the worst. and all i think about... is EB. and how EB pain is this.. times a billion. Tripp is a superhero. my little fall is NOTHING compared to EB. but I appreciate the reminder... and sent some more prayers your way. go baby go.

God bless you and your family Courtney. I have been reading ur blog for a while now and I am so sad to hear of Tripps passing. I have been praying and will continue to pray for peace for Tripp. You are a remarkable person and Tripp is a precious angel. god bless you

Please know how very sorry I am for your loss. Our Heavenly Father holds a special place for you and Tripp in his heart. Tripp was so special to him that he need come to earth only for a body and return to his side. He came to you bringing trials but also many blessings as you are a very special woman and mother.May you know Tripp will continue to watch over you and love you. My heart hurts for you but I know that Tripp is healthy and running free in Heaven.

RIP beautiful little angel Tripp. I never got to meet you, only in your pictures, but I've grown to love you and am so very, very sad to hear that you have left us. You can rest now, pain free little guy, and know that I will never forget you. You will always be in my heart little Tripp.

I read your blog- it was posted on a member of my Church's FB Page. We are Mormon and very much believe that there is life after this one. I am so sorry that Tripp passed away yesterday. I am grateful that he received the peace you so faithfully prayed for and am so sorry that this was the means by which he had to receive comfort and peace from his pain. I was blessed w a beautiful daughter on December 31,2011 it was a scheduled c-section and my husband was deployed. Right away it was clear her lungs were not working and the following day she required a transport to a larger NICU. My husband was not able to leave Iraq until she was 3 months old for his 2 week R&R. I watched her suffer- her bp would jump if she was touched and that was only every 4 hours at touch time for diaper changes. All of her injections were set up so she did not have to be touched or feel anymore pain- they went in through machines already connected to her. She is one now and has very few issues... Her bp is always at 110 due to clots which went away after a frozen plasma transfusion and injections in the NICU and given by me at home. I cannot imagine though watching her suffer for 2 1/2 years. My heart breaks for you. I taught special education- most of my students were deaf and/or blind, all were wheel chair bound, and on feeding tubes and while I know that they brought much joy to my life as their teacher and their parents it is not what their parents wished for them. I did not read the hurtful comments people left but how they made you feel. I also am shocked that people would accuse you of such things and I am sorry they did- I know that only made things worse. Remember though that there are mean people out there who do not treasure parenthood the way you and I do and abuse their children and I have seen that other parents pay for the actions of those parents. People assume that because some people abuse or exploit their child's illness that all parents do. Some parents thrive on the attention so again some people assume that all parents do. Just remember the only thing that matters is that God knows of your eternal love for your precious son, your son knows, and you know. And while people's comments doubting that may hurt their opinions do not count. My family will keep you in our prayers. I do not think that God finds you selfish for wanting your son here with you- he is your son and you never imagined having to let him go. Hugs and prayers.

I stumbled on your blog on Facebook. I am deeply sorry for your loss and please remember to keep the faith. As you said, your beautiful baby is with Jesus now completely healthy, happy and no longer in pain and you will be with him again when the time is right. I don't know you, I don't know your son, but my heart is about to explode out of my chest. I am a mother and I just can't imagine what you have and are going through. What I do know is that you are absolutely incredible. You are an inspiration to all parents whether they have a healthy child or a child with special needs. You are much stronger than I could ever think of being. I am praying from the bottom of my heart for you and your family and friends. May the light of God surround you. May the love of God enclose you. May the power of God protect you. May the presence of God watch over you. Wherever you are, God is, and all is well.

Hello Courtney,My name is Laura and Im a Mom of a Special Needs Angel(Timothy) too. I know what your going through. Im so sorry for your loss. If you would like to connect and talk sometime, please don't be shy...Remember to be Patient with yourself and keep reaching out. I only recently discovered you and Tripps' story. I keyed into your blog here and was looking at his pics. I can tell he was wise beyond his years and had the Special Needs Stubborn spirit all of our kiddo's have. Thank you for sharing Tripp with us. One thing that I remember when I first lost Tim was something someone told me once. They said that Tim is in heaven but remember...He will always be your Son and you will always be his Mom. Courtney, its the same with you and Tripp. Nothing will change that. On my bad days I think back to that saying and realize its comforting to know that I will always be Tims' Mom. Same with you and Tripp... Im thinking about you and your family and send thoughts and prayers and big Hugs... Our boys are hangin with the "Big Dog" and jammin Laura C.Lauratwc@yahoo.com or I have a blog too.. My Main one is at www.lt4swanchd.wordpress.com/ or www.lt4swanchd.blogspot.com/ Proud Mom to SWAN/CHD Angel, Timothy(10-11-94 to 6-15-95)

Courtney, I have no idea what it has been like for you to take this journey with Tripp. Pain, I'm quite certain, is a word that does not even begin to do justice to the loss you feel in your heart. During a very difficult time I was given the best advice from a total stranger. I could keep my journey to myself, and that was my absolute right, or I could share it with others and help somebody along the way. You've already done that - sharing your journey with people whom I'm sure feel completely alone in their lives raising a child with EB. Through your sharing this journey, you and Tripp have taken his two years and eight months and given them more meaning than those who live a normal lifetime with little meaning. I wish you nothing less than peace and love, and pray that you find comfort in the spirit of the joy Tripp's life provided you.

I just wanted t say that my heart goes out to you and your beautiful guy is in my prayers. It's so hard to try to think of it in terms of the fact that Tripp is in Heaven now and free of pain. That will come in time. It's ok to miss him, to want him back. You have an incredible well of strength and you will survive, for Tripp. You truly are a marvel and an inspiration, reading through your posts I am utterly humbled by your love for your child and your amazing lack of bitterness. In the weeks and months ahead, just rely on the love of family and friends. You will begin to heal. Make the rest of your life a tribute to Tripp, I know you will. With Deepest Sympathy, Heather Behan-Egan Westerly, RI

My heart breaks for you, Courtney! Your Tripp is an angel in Heaven now, but you were his angel on Earth!!! May you find some comfort in the many friends and family who are there for you now, and in the loving embrace of our Heavenly Father as he guides you until the day you will be reunited with Tripp in his healthy body in Heaven one day. God Bless You!

God Bless you and your family. As a father of three beautiful and healthy girls, I cannot begin to imagine the pain that you have dealt with; or the strength that your love has shown. I know that Heaven is a finer place with Tripp in God's Loving Arms.

Dear Courtney, I really don't think I can find enough words to express my sadness at your loss, except to say you really are an inspiration. Tripp was obviously a very special little boy; I'm pretty sure that God chose YOU as his very special mummy. No doubt you'll keep your memories of your son in your heart forever. Sweet dreams, little man x

My heart truly hurts for you... from looking at the pictures and reading the words you wrote they will forever be etched in my mind. Having never met him but yet has had such a affect on my life, I say a prayer for Tripp thanking him. Thank you for allowing me to be able to know him thru your blog, he truly has touched a lot lives....

courtney....i am so heartbroken for your lost. thank GOD that this beautiful little boy is now experiencing a new and perfect body in Heaven.

I was especially touched by your story because I knew that my company donates regularly to this cause. Tripp's story made it very personal for me. I will smile now each time I buy a product that I know results in an automatic donation to EB research with Stanford and Nu Skin.

To you and your family, we cannot thank you enough for sharing your lives with us. It has blessed us in many ways beyond words. I know that Tripp wouldn't have had life any other way knowing you are his mom and the unconditional love you gave him. There are no words great enough to describe your God sent ways you were with him. Many people are giving the chance to become parents and gripe at the smallest of issues...you gripped the greatest of tribulations by the reigns and held on without fear...you understood the hard work it would take and you've made us all very proud, thankful, and blessed to know you. Being a parent who lost a daughter after 16 days old, I can understand your pain. Fear not, the Lord has his mighty arms wrapped around your little angel and has healed him 100%! No more pains and sorrows and that my friend...is a miracle. God Bless you all! With love in Christ,

The strength you and your family have is amazing. I read Tripp's story and was so moved by what you wrote. What touched me most was what you said about Tripp being a gift from God and being sent here for a reason. He has touched so many lives and will continue to touch people's hearts, which is all part of His plan. Thank you for sharing Tripp's story. You are in my prayers. Peace and love to you.

God bless you, Courtney. What an amazing mother, woman, person, and human being you are! Just reading your words, it's obvious how much you loved and adored that little angel. I know that precious beautiful baby is running around heaven and playing with Jesus! He no longer has to suffer and hurt. Tripp's and your story is so amazing, inspirational, and heart-wrenching (I'm crying like crazy just writing this)! I'm a new mom of a 4 month old baby girl, whom we almost lost at birth due to complications. She's doing fine now, but I cannot even imagine going through what you've been through and watching your baby suffer for so long. Prayers are going up for you and your family. RIP heaven's drummer boy!